Tag / dissociation

by krubesch

Hearts Keep Drumming

Hearts Keep Drumming

Oh life
Is just a game
No one ever tells you how to play
See different people
Go different ways
Some of them will leave you but
Some of them will stay
Well our hearts keep drumming
And the years keep coming
Quicker than they’ve ever been
You’re sick of the same thing
But it’s quicker than changing
It’s too late to begin
Well everybody’s running
But you don’t know where
Time is running thin
Everybody’s looking for somebody to love
But we’re scared to let them in
And I say oh oh oh
Are there any survivors?
Am I here alone?
I say oh oh oh
Are there any survivors?
Am I here alone?
Am I on my own?
Am I on my own?
Oh love
It comes and goes
But no one never tells you how to learn to let go
Different people, they walk different roads
Some of them will hurt you but
Some of them won’t
Well the bridge is burning
And the wheel keeps turning
Quicker than it did before
Your heart screams “yes”
Your head says “no”
And you’re never really sure
Well everybody’s running
But you don’t know why
Time is running short
Everybody’s looking for a place to hide
So there’s no one left at all
Survivors
By Passenger

It’s been almost a year since I have posted on my blog. It’s not that I have not written, I just did not feel like sharing what I wrote, as it has been a difficult year and I have felt guarded. Everything I wrote just seemed so dark and depressing. I judge myself a lot harsher than I would anyone else and feel like what I have written is utter crap. This past year has felt like being on the biggest and craziest roller coaster at six flags. Not only have I had some of my lowest moments, I have also had some really good experiences, in which I have pushed myself out of my comfort zone. These experiences seem to have changed me in substantial ways and pushed me to grow in ways I don’t think I otherwise would have.

In February after years of hearing about it, I took part in Ladies Rock Camp. Thanks to my friend, Emily (!) and all my awesome friends who donated towards my tuition. This is basically a 3 day music camp for adults that includes music lessons, we are split into bands, and then tasked to write an original song and then perform it at a venue. I was so excited and nervous before participating and had a lot of self doubt about taking part in this. I am so glad I did it! I played the drums (my first choice of the 3 instruments I put on my paperwork) at Ladies Rock Camp and this was the first time I had seriously played since I was 17 years old. I had a bad experience with a band director in high school and was picked on for being one of the only girls (and good) who played the drums in middle school and thought that I would never play again. This experience was amazing and really boosted my self confidence. I feel like I was able to reconnect with this part of my 17 year old self and it felt really healing. It was nice to prove to myself that I could do something that felt really scary and out of my comfort zone and actually excel at it. I didn’t even get mad at myself when I goofed up during our performance (big deal for me!). This is something I try to hold on to when I am having difficult moments and I am slowly starting to add the drums back into my life as a fun activity. This was definitely one of the heights of the rollercoaster of the past year.

Part of the reason why I am writing about all of this now because not only do I need to sort out the thoughts in my head, but I think I need to reach out for help from my friends and family. Writing seems to be the only way in which I am able to articulate my thoughts and needs in an effective way.

I was diagnosed with stage 4 endometriosis after having surgery on 08/01/2018. The doctor who diagnosed me was the 7th doctor I had seen for the chronic pain I had been experiencing at that point for two years. Although that surgery relieved a lot of my pain, I started having chronic back pain again in October of 2018. Since then my pain has increased and is now affecting different parts of my body. Currently, and in the past 6 months, my pain levels radiate between 6 out of 10 to as bad as 10 out of 10 on the pain scale. My wife tells me I am not an effusive or demonstrative person (What?! who is surprised by that other than me?!) and that she has not been aware that I have been in that much pain since I don’t go into detail when I tell her I am hurting. To me, saying that, “I am hurting” means that I am in a lot of pain because I don’t usually complain. I think that I am conveying to people how I feel when apparently I am not getting my point across. That has been a big source of frustration in general for me, as I think I am communicating to people when I am actually not. I need to keep this in mind and try to be more descriptive with my words.

After almost 8 months of physical therapy ($$$ because hardly any pelvic floor therapists in Georgia are in network with insurance), an MRI, a back x-ray, appointments with my primary care physician, my surgeon and a rheumatologist, I still did not really have any answers about why I was continuing to have chronic back, hip, glute, thigh and heel pain. In early April, I became a little desperate about my increased pain and decided to get a 2nd or 8th (depending on how you look at it) opinion from a doctor in Chattanooga who was in network with my insurance and really seemed to know his stuff. When I called the earliest appointment he had available was 08/06/2019, so I went ahead and scheduled it.

On my birthday, 4/30/2019, the surgeon who originally diagnosed me, called me to let me know I had some concerning cysts and “fluffy” tissue that her radiologist noticed on the MRI I had in February (after Emory told me it was normal- the 2nd MRI they have misread). She let me know that she would need to do multiple procedures along with a biopsy as soon as possible to determine if that was causing my recurrence of pain and to rule “other things out.” Of course I immediately went into panic mode and consulted Dr. Google! Bad idea… My immediate concern became that I might have cancer. I continued to pretty much obsess about this until we finally got the results of my biopsy. Almost two months after that phone call and the procedures, I found out that I did not have cancer and that the “fluffy” tissue was likely due to the excess estrogen that is caused by endometriosis.  Not a definitive answer as to if this is causing my pain. My doctor seemed pretty unconcerned with my pain levels, especially since my test results all came back “normal.” I decided to keep that appointment with the other doctor in Chattanooga in hopes that he might have some insight.

I am really glad I kept the appointment with the surgeon in Chattanooga. He listened and asked questions in a way no other doctors had up until that point. He knew from looking at my previous surgery pictures that I still had endometriosis on my intestines and most likely in other areas in my abdominal area. He told Leah and I that I would need another surgery and explained that I would need to have my appendix removed because it can be a pelvic pain generator and excise any endometriosis that he finds when he goes in. He also highly recommended that I get a hysterectomy and he will leave it up to me as to whether I keep my ovaries or not. He did extensive blood work at that appointment, ordered a lumbar MRI (in hopes to see if he could tell what was causing my back pain, although he is pretty sure it is endometriosis). I left that appointment in tears- partly because the drive to Chattanooga felt amazing compared to Orlando (my other surgeon’s office is there) and really because, once again I know my body best and I am not crazy. He validated the fact that I knew and still know that there is something wrong with my body and my surgery was scheduled by the time I left his office. His office is so much more efficient than my previous surgeon. He answered all of my and Leah’s questions in detail and spent over an hour with us at my appointment.

I thought that waiting 4 months for my appointment with him would probably be the most difficult thing out of this process, well I was wrong. Our insurance changed in July of 2019 and I have been trying to get the MRI that my doctor ordered approved by our insurance company for two months at this point. My doctor’s office and I have spent hours on the phone with them, he did a peer to peer review (where your doctor tries to convince one of the insurance company’s doctors that you need whatever procedure they’re denying), and I wrote an appeal letter- including my eight months of physical therapy notes, my x-ray results, and a note from my therapist (basically saying that chronic pain and constant self-advocacy and battles with insurance is affecting my mental health). I am still in limbo as of today as to whether they will cover my MRI and my surgery date is 20 days away. I thought that having three months in between my appointment and my surgery date would give me plenty of time to get everything in order. As of today, I still don’t know if they are going to approve my surgery that is scheduled out of state in less than 3 weeks.

Everything came to a head last night and I had an epic meltdown. I started crying while I was cooking because we were out of avocado and that was supposed to go into the meal that I was cooking. I am on a crazy anti inflammatory/endometriosis/ interstitial cystitis diet to try to manage my pain and inflammations and it was the avocado that tipped me over the edge! All the feelings that I have been keeping at bay by remaining constantly busy, productive, researching and planning, all came rushing to the surface and finally I let myself stay with my feelings and allow them to move through me. I am so so tired. Being in constant pain and remaining a productive member of my household, job, and society in general is so draining. I am very careful as to how much we have scheduled outside of work because even a fun and easy dinner with friends is exhausting. I know that I have been isolating myself for this reason and also having a chronic illness that involves my lady parts is not necessarily the easiest thing to talk about, nor the most acceptable in our society. I am aware that I am not reaching out to people when I need to and I am going to work on this.

It’s very hard to try to process losing my uterus when I don’t even know if or when it is actually going to happen. It feels hopeless to have to fight with my insurance company when I am in so much pain and the dark thoughts I try to keep at bay come bubbling up to the surface. These suicidal thoughts make me feel riddled with shame along with the shame that comes with having endometriosis in the first place. Not to mention having to prove to doctors and insurance companies that there is something wrong with my body. This is something that needs to be discussed. 1 in 10 women have endometriosis and so many women have hysterectomies and don’t talk about it. I would love any input from those who have had one, as to what to expect, tips and anything else I might need to know.

I am scared about my surgery. I am scared that the surgery won’t help and that I will feel this way the rest of my life. I am scared of not knowing how long I will be out of work (it will depend on exactly what is done in surgery and we won’t know until it happens). I am terrified that we will have to go into debt or that I will have to delay this surgery even longer. I am scared that permanent damage is being done to my body while I am in this limbo. I worry about Leah having to take on most of the household responsibilities while I am recovering, and the toll her worry over me takes on her. I worry that I made the wrong decision in not having kids now that it is almost too late. I worry about possible complications from my upcoming surgery. I am so anxious about our insurance and whether we will have surprise bills IF they even approve my surgery.

 

Did you know?

  • Endometriosis is one of the top three causes of female infertility
  • An estimated 8.5-10 million women in the US and 200 million (that’s 200,000,000) worldwide are believed to be affected
  • Extremely painful menstruation, endometriosis’ most commonly known symptom, is the leading cause of missed work and school in young girls and women, according to one NIH study
  • Endometriosis commonly goes undiagnosed or misdiagnosed, with women experiencing about 6-10 years delay before being correctly diagnosed
  • Endometriosis is also frequently undiagnosed in teenage girls, due to persistent medical myths, like the false belief that pain with periods is normal or that teenagers rarely get endometriosis
    Taken from http://nezhat.org/endometriosis-treatment/endometriosis/
by krubesch

Real Talk

“Write hard and clear about what hurts.”
Ernest Hemingway

Due to the recent celebrity suicides, I have been thinking a lot about what my depression looks like on the outside and how people I am close to would know when I am struggling to keep my footing in this world. I know I have written about my depression and suicidal thoughts before (as this blog is mostly written about these subjects), but each time I put my most vulnerable thoughts on paper and create a permanent record letting everyone know my struggles- it feels like coming out all over again. Let’s be honest, it’s pretty taboo to admit that your brain is fucked up and that is one of the reasons why it’s important to talk about it. A few years ago I had to take a FMLA leave from a job that was very stressful and I was struggling with increased PTSD symptoms along with high blood pressure. I remember being completely distraught when my FMLA paperwork was sent to the wrong fax and a coworker looked through my paperwork and started rumors that I was having a nervous breakdown. I was so ashamed that I had to take a break from work and that my PTSD was a part of the reason why I had to. It felt taboo to show any weakness, especially since I was in management and I was terrified of what people thought of me.

People resort to suicide, or at least I struggle with suicidal thoughts when I am overwhelmed with my feelings and emotions along with the shame and stigma of having these thoughts in the first place. The silence of keeping these thoughts to myself is often deafening and although all of this is embarrassing to admit, we need to talk about it or we will keep losing people we care about. I cannot speak for Anthony Bourdain or Kate Spade, but I can speak for myself.

Today was one of the hardest days I have had in awhile. I had a particularly difficult and draining therapy session last night and being in constant physical pain is starting to wear on me. I feel like I have been hit by a bus, which is how I usually feel the day after I’ve done a lot of work in therapy. I pressed the snooze button for over an hour and fell asleep in the shower. I contemplated staying home from work, but knew that might make things worse. On my drive into work I thought about what my outward signs of depression look like and I came up with this list:

  • I completely stop wearing makeup because I usually end up crying on the days I actually wear mascara and I look like a racoon (it’s harder to hide that I’ve been crying). I also sleep too late in order to have time to put it on.
  • I stop exercising and want to spend most of my time watching tv or laying in bed.
  • I push people away and cancel plans- even though I desperately want to connect.
  • I become forgetful and have a hard time paying attention.
  • My posture is different- it feels like I am moving through my day with a heavy, wet blanket on my shoulders. Every daily task feels difficult.
  • I am way more quiet than normal (crazy, I know!).
  • I have sleepless nights or I sleep for over 10 hours at a time.
  • I avoid eye contact and shut down
  • I use humor in order to avoid serious conversations or in a self deprecating way before anyone else can criticize me

Words I have heard to describe people who have committed or attempted suicide are lazy and selfish. I personally know that this is not true. Suicide may look selfish to the people who are left behind or those who don’t struggle with this particular demon, but as someone who has contemplated suicide, I have convinced myself that it is the least selfish thing I could do. Depression tells me that I am a burden and that people are tired of dealing with me. It convinces me that everyone would be better off without me and that I would really be doing the world a favor. As someone who has worked really hard and spent thousands and thousands of dollars in order to try to combat (or at least alleviate it, since it appears to not be going anywhere) my depression, I would argue that I am the opposite of lazy, even though American society and I tell myself that I am. Sometimes that is the worst part, working so hard to feel better and it never (my wise mind knows that it is occasionally and not always) feeling like it is enough or that I am trying hard enough. Sometimes I get really mad and feel like it is selfish of people to make me promise that I won’t hurt myself, when I know that they just care. I feel like they don’t understand, but I know deep down that this is not necessarily true. I get mad at them because if they cared so much, then why don’t they do more to make me feel better? Don’t they know that if I am contemplating suicide, it feels unbearable to be inside my body and in my mind? But I know, that it’s really not up to them to make me feel better, it’s all on me.

What do you do when a friend is struggling? It helps me when people check in with me, even though I might have stopped reaching out to them. Talking to or just sitting with someone who I know will just hold space for me helps. I clam up if people tell me how I have it better than others (of course I know that, it does not negate that I still feel this way) or if they freak out about hearing that I have had suicidal thoughts. Please do not tell me to do self-affirmations. Please do not tell me that this too shall pass, because in the moment it feels like it won’t. Something as simple as a text can help me when I am in a funk. Asking me to reach out when I am struggling is complicated. That is the last thing I want to do when I am down in it. I recognize that it is my responsibility to get help when I need it, but I tend to only reach out for help when things are pretty bad.

I can say that the severity of my suicidal thoughts has diminished over the past year and that it does appear my hard work and money spent is helping in that regard. I am too practical to hope that one day I won’t have these thoughts or urges, as they have been a part of my life for a very long time. If you also struggle with suicidal ideation, I can say that is gets better (or maybe more manageable) even as cliché as that sounds.

 

For crisis text line- Text CONNECT to 741741 in the United States.

 National Suicide Prevention Lifeline: tel:1-800-273-8255

 

by krubesch

TMS

“Perhaps the biggest tragedy of our lives is that freedom is possible, yet we can pass our years trapped in the same old patterns…We may want to love other people without holding back, to feel authentic, to breathe in the beauty around us, to dance and sing. Yet each day we listen to inner voices that keep our life small.”
Tara Brach, Radical Acceptance: Embracing Your Life With the Heart of a Buddha

My last session (number 35) of TMS (transcranial magnetic stimulation) was on Friday 07/07/17.  I am really glad that I was fortunate and privileged enough to be able to receive this treatment due to insurance and a very flexible boss (THANK YOU INGRID!).  I can’t say that I am completely better and that it’s made a huge difference, but I think it’s definitely helped.  When I am in a bad place it’s really hard to remember my good days and when I’m in a good place it’s hard to remember how low and dark I can get.  In order to keep track of how TMS has affected me overall and on a daily basis,  I kept a log everyday with: the date, appointment number, medications taken that day, symptoms/ side effects, mood (1-10) before TMS and after, number of appointments each day (including TMS), activity done during TMS, and blood pressure and heart rate.  I am really glad I used this log everyday and included all of these categories, as it’s hard to keep track of it all.

What I noticed after 2 weeks (10 sessions) was that it felt like the wet heavy blanket of depression was lifting up and not weighing as heavy on my shoulders.  I had to take a good look at my log and my everyday activities to really determine how it was helping due to the fact that I have PTSD in conjunction with my depression.  The experience with TMS made it easier to separate the depression from the PTSD because the depression lessened, but my PTSD symptoms have remained.  This sounds like a bad thing, but actually it was quite helpful because I am aware now of the work I need to do and how PTSD affects my life separately from the depression.  I was able to tell that my depression had lifted because I have been walking the dog a lot more, I’ve had some good days and had that awareness, I’ve been upping my game on my appearance such as nicer clothing, wearing makeup, and blow drying my hair.  I’ve been more active with my social life and making plans with friends.  I’ve had more energy, which has enabled me to cook dinner and keep up more with the house.  There have only been a few nights since the end of May in which I have had to take sleeping pills (the first time in over three years!),  and I have been thinking more about my future and career goals again.  I knew that when I was looking back into pre-requisites and Occupational Therapy programs that I was definitely feeling better.  I have not made any decisions, but the fact that I am investigating is huge.

I wrote these two first paragraphs over three weeks ago and since then life has been extremely stressful, which has affected my anxiety and sleep.  My wife’s car was totaled on 07/09/2017 due to another driver being on his cell phone and thankfully she was not seriously hurt.  That is the silver lining. Pearly White, on the other hand was decimated and dealing with the other driver’s insurance has been a nightmare.  The added stress of being down one car, having to buy another car, dealing with his insurance company and ours, and ultimately taking on a car payment unexpectedly (Pearly had been bought with cash and we were going to keep her until her wheels fell off) has increased my anxiety level as a whole and brought sleepless nights and use of sleeping pills I had previously- proudly stopped needing.  Although I have been triggered by this huge event and other minor instances since stopping TMS, I can say that the heavy fog of depression has mostly stayed away.

This has lead to some serious work in therapy now that we are not trying to remedy the depression and keep it at bay.  Since the depression has lifted I have had longer and more intense flashbacks of the rape I endured as a 4 year old.  We’ve also been dealing with my ever present and immense feelings of shame and my relationship with my father. These have been very difficult sessions and I often feel like I have been hit by a truck the next day and have difficulty adjusting my emotions the night of.  Although these sessions are difficult and highly distressing, I think that it’s necessary (unfortunately, because if I could keep trying to avoid this- I DEFINITELY would).  We have not decided to work on these things in sessions, rather my body seems to be telling us that we must.  It actually amazes me how the simple act of focusing on my breath or closing my eyes brings on these crazy body memories and flashbacks during therapy.  I get mad at myself because they seem to come out of nowhere and it’s not like my therapist and I are specifically talking about the trauma or anything.  Because I get mad at myself, my feelings of shame increase, which seem to be the trigger for these flashbacks- and thus a cycle ensues.

Yesterday in therapy we were discussing kindness or compassion, and my therapist asked me to close my eyes and imagine people who I feel safe with.  Before I closed my eyes, I had the foreboding feeling that a flashback was in my near future, and as soon as I closed my eyes the familiar body sensations started and I was triggered immediately.  Once I told my therapist what was happening, she asked me what I was feeling and I told her that my critic was out in full force.  She asked me what it was saying and I told her, which lead to talking about growing up with my father (since he is basically the critical voice in my head) and soon after starting to speak about him I could feel myself leaving my body in a dissociative haze.  My dissociations have been different lately, it was like I was looking at my arms knowing that they were my arms, but feeling like that was not really my body and that those arms did not belong to me. If that makes any sense. It’s hard to explain. I’ve also started getting paralyzed (literally unable to move) when this happens, which totally freaks me out too. Usually I just numb out when I dissociate and the unwanted feelings go away.  This time and during the last therapy session it was like I was actually leaving my body.  I felt the sensation like I was falling away and that it was possible that I could go away from myself completely.  It’s a very unnerving feeling and makes me question reality.

This post was initially going to only be about TMS, but as usual, when I start writing I don’t know that I have a lot more to say.  I am including a video/podcast from Tara Brach that my therapist encouraged me to watch at the bottom of this post.  I found it pretty helpful as it relates to trauma and healing. One of my favorite quotes from the video is, “Those who are wounded in relationship, need relationship to heal.”  I think there is a lot of truth in that even though being in authentic relationships feel terrifyingly vulnerable and being rejected is my ultimate fear.

 

by krubesch

Enough

“We all have burdens we carry through life, grief and disappointments that we can’t change. But we can make them lighter if we don’t hide them, if we don’t try to bear them silently and alone.”

Joanna Connors

 I will Find You (P.235)

It’s been quite crazy and busy the past several weeks for a lot of different reasons.   I have had to juggle a lot of doctors appointments along with work and situations that inevitably arise in life.  My stepfather died on May 2nd after a year and a half battle with pancreatic cancer.   On May 1st I unexpectedly flew to Seattle to see him and be there for my mother when he took his last few breaths.  I am so grateful that the timing worked out so that I had a chance to visit and hug him the day before he died. Similarly to my father’s death, I had feelings come up that I had not anticipated.

In early April, when it was apparent he did not have much time left, I decided to write him a letter.  In this letter I wrote the things I wanted to say to him, but knew I would never be able to adequately say them out loud – as writing is my best form of communication.  When I sat down to write the letter- as usual, feelings and thoughts I did not know I was having poured out onto the computer. It often feels like my fingers keep all my feelings, thoughts, and secrets.  I will not bore you with all the details, but I wanted him to know how thankful I was that he came into my mother’s life and how he wormed his way into my closed off heart.  After my father died I felt like I was done with father figures (I had paid my penance and wanted to be free) and really wanted nothing to do with another one.  When my mother started dating Arnie and married him I would refer to him as “my mother’s husband” instead of my stepfather.  She married him long after I was out of the house and he was not my father in the usual sense.

Fortunately for me, Arnie was more than just my mother’s husband.  In a way he became one of my most important advocates.  He not only saved/repaired my relationship with my grandmother, but also opened doors in my relationship with my mother.  Arnie lived what he preached (an example of a true Christian) and this was evident in the way he helped me to navigate my relationships with my mother and grandmother as a queer person.  I was outed to my 98 year old grandmother by another family member and I was completely devastated.  I had planned to not share that part of my life with my grandmother because she was very religious and conservative and I just felt like it was not necessary to.  I had remembered how disappointed my grandmother was when she found out Rosie O’Donnell (big surprise!) was gay.  Anyways, Arnie and mom happened to be with her in Daytona when she was told that I was gay and he was able to sit down and speak with my grandmother and my relationship with her remained mostly intact until the day she died.

Arnie also made my mother happy in a way I had never seen before.  Her smile was real and bright and she had a little dance to her step. I am very grateful to him for this because she definitely deserved to have this kind of companion in her life.  He also had a way of saying what one needed to hear. During our last phone conversation he kept telling me that I was enough and that I needed to remember that.

I got back from Seattle on May 8th and then on May 9th I started my first session (of 30) of TMS (transcranial magnetic stimulation) and got an IUD in order to alleviate my possible endometriosis symptoms.  My TMS treatment is 5 days a week for an hour for 6 weeks. The picture featured above is a picture of me receiving the TMS treatment.  The black piece of equipment on my head is the magnetic device.  For four seconds it feels like a wood pecker (not painful, just a little uncomfortable) is vibrating on my head. Then there is 20 seconds of silence and it repeats for about 45 minutes.  During TMS I have been using the Headspace app to meditate for 10 minutes and then I listen to music or read a book for the remaining time. On Friday I finished my 9th session and I think it is having a positive effect on my overall mood.  It’s still a little to early to tell.

Prior to leaving for Seattle I had an EKG and found out that I have a prolonged QT interval, which is most likely caused by my combination of medications. Because a prolonged QT interval can be dangerous and I have a strong history of heart disease in my family, it was necessary to make some pretty immediate medication changes.  So along with the TMS and IUD I have been tapering off Lexapro and Trazadone onto Vyybrid and something else to help me sleep at night (have yet to find).  Needless to say it’s hard to determine what is responsible for changes in my mood with all of these factors happening at the same time.  I have been keeping a daily log about my TMS treatment and will be posting more about my experience with TMS once I have completed the treatment.

by krubesch

Cocktail

“In response to the trauma itself, and in coping with the dread that persisted long afterward, these patients had learned to shut down the brain areas that transmit the visceral feelings and emotions that accompany and define terror. Yet in everyday life, those same brain areas are responsible for registering the entire range of emotions and sensations that form the foundation of our self-awareness, our sense of who we are. What we witnessed here was a tragic adaptation: In an effort to shut off terrifying sensations, they also deadened their capacity to feel fully alive.”

Bessel van der Kolk, The Body Keeps The Score, p.94

I kind of feel like I have lost myself. Like all this work in therapy on dismantling negative beliefs and delving into the parts of me that feel like a dark abyss make me feel like I don’t know who I am.  I guess if I’ve dissociated or hidden parts of myself from myself for years maybe I never knew who I really was.  I was always just a shell of myself- what others dictated of me.

My time these days consists of working, spending time with my wife, and going to various medical professional appointments.  There was a 2 week (10 days M-F) period when I had 11 appointments while clocking 68 hours at work.  And yet all of these appointments were necessary.  Two of these appointments were at the Treatment Resistant Department at Emory (http://www.psychiatry.emory.edu/programs/trd.html).  Because medication and talk therapy are not significantly improving (or fast enough) my depression symptoms, my psychiatrist referred me to the TRD team.  These two appointments were two and three hours long involving a psychiatrist, a psychologist, and several computerized assessments.   After my appointments the team concluded that TMS (Transcranial magnetic stimulation) and possibly switching up my medication cocktail (yet again) were the best course of treatment for my particular situation.  Right now I am waiting on hearing back from Emory to see what my insurance benefits will cover for TMS.  If everything works out I will be going to an hour long appointment five days a week for six weeks having a coil deliver a magnet pulse on the surface of my head. (http://news.emory.edu/stories/2016/06/hspub_epstein_tms_for_depression/campus.html)

I am hoping I am able to do this and that it might deliver some results.  I am not putting all my eggs in this basket and will continue to go to therapy twice a week as I have been.

In January we added a stimulant to my medication cocktail.  This addition has been somewhat helpful, but I can’t figure out if the benefits outweigh the side effects.  The medication decisions lately seem to revolve around whether I can tolerate certain side effects and nixing other medications which have side effects I have deemed deal breakers.  Right now deal breakers for me are weight gain and lethargy (I don’t need any more help feeling tired!). Vyvanse, the stimulant I am taking, has definitely helped me to cope better with everyday life. It’s less effort to get out of bed, I’ve been actually cooking dinner, and I can manage a dog walk 1-3 times a week. I have even been to the gym once to lift weights!  This is a huge difference from the previous 4-5 months.  Headaches, an even drier mouth, more shakiness, jitteriness, and a brain fog in the afternoon are what come with the benefits.   I can’t decide if the jitteriness is increased anxiety or just extra energy I am not used to having- maybe both.

Another fun thing that’s been becoming increasingly painful and ever present is pain in my lower abdomen/pelvic region.  I have been assessed by my pcp, my gyno and will be going to the urologist this coming Monday. So far all the diagnostic testing shows that I don’t have anything wrong with me.  The gyno thinks that if I am cleared by the urologist I might be having symptoms of endometriosis and she will put me on birth control (more pills yipee!).  I have noticed that the pain gets worse when I am more emotionally dysregulated which means it could have an emotional component.  After finishing The Body Keeps The Score, by Bessel van der Kolk I understand how trauma has contributed to my chronic pain issues.  I do want to get completely checked out first before we determine that this is mostly trauma related.  The TRD clinic did comprehensive bloodwork and urinalysis tests when I was there.  The tests  concluded that I have an abnormally high blood sedimentation rate and a high C-reactive Protein level.  These tests basically just mean that I am having body inflammation.  It does not determine, why, where, or how.

Along with the pelvic pain comes increasingly more vivid and painful flashbacks. They seem to trigger each other. That’s also fabulous. Van der Kolk states, “Trauma victims cannot recover until they become familiar with and befriend the sensations in their bodies….Noticing sensations for the first time can be quite distressing, and it may precipitate flashbacks in which people curl up or assume defensive postures. These are somatic reenactments of the undigested trauma and most likely represent the postures they assumed when the trauma occurred” (p.102, 103).  I was totally weirded out in therapy last week when I curled up like a child and hid my face from my therapist. This action was involuntary and I just found myself just going along with what my body wanted me to do.

I have had friends ask me if I think all of this is necessary and if drudging up the past is just making things worse.  I have wondered the same thing, but both my therapist and van der Kolk (among many other professionals) have said that “In order to regain control over yourself, you need to revisit the trauma: Sooner or later you need to confront what has happened to you…” (van der Kolk, p.206).  It’s like the saying, “the only way out is through.”  Going through this recovery/process is probably the hardest thing I have ever done, but I know that not dealing with the trauma for more than three decades has brought me harm and strife.

The Body Keeps the Score is probably the most life changing book I have read to date.  It’s crazy how I can relate and see myself in almost every chapter of van der Kolk’s book.  It has really helped me to understand why I cannot readily identify emotions or know what I am experiencing/ feeling- there is a name for that, it’s called Alexithymia!  I need facts and information in order to make sense of myself and seeing it in written form really brings it home.

If everything falls into place, I plan to write and keep a daily journal about the TMS treatment. The psychiatrist at the TRD clinic also recommended that I use the hour during TMS to do some sort of meditation or relaxation techniques to make double use of that time.

by krubesch

Triggers

“Ongoing experience convinces me that some children respond to pervasive emotional neglect and abandonment by over-identifying or even merging their identity with the inner critic and adopting an intense form of perfectionism that triggers them into painful abandonment flashbacks every time they are less than perfect or perfectly pleasing.”

Pete Walker

The only time I am in touch with my anger/rage is when I’m driving.  It always shocks me when I venomously yell out curse words or hurl insults at crazy drivers around me.  I don’t recognize my own voice. I have to stop myself from flipping people off.   It’s interesting to me that this is the one situation where I express anger. I guess it’s safe? Because I am in my car and it’s socially acceptable to have some road rage.  No one can hear me and I am in my own space.  Quiet  and calm Katie disappears when I buckle my seatbelt and put my car in drive. I’m becoming more aware of my habits, traits, and actions.

I mentioned in the my last post that I have started EMDR with my therapist and it’s been pretty intense.  I have also been attending DBT (Dialectical Behavior Therapy) class every other week.  Since I’ve begun processing events of my childhood I’ve gone from one regular therapy session and one DBT session to as many as three therapy sessions and one DBT session a week.  I’ve been gauging how I am doing by how many sessions I’ve had to go to in a week.  A four session week means that I am  not doing well and having to take each day an hour at a time.  The good thing is that I’ve been reaching out and asking for more appointments when I need them instead of “toughing” it out.

Since we started doing EMDR I am more aware of my anger and a greater presence of PTSD symptoms.  I’ve been extremely jumpy in my everyday life.  The other day Leah was driving and I literally jumped out of my seat because of brake lights ahead of us. I scared the crap out of both of us!   Today I’ve jumped when the office phone rings, when I hear a loud noise from the restaurant above our office, and when the bank teller surprised me.  I had forgotten what this feels like- always being on edge. I’m also not paying as close attention to tasks and everyday things as I normally do. I went flying over a speed bump that I did not see and took my car and myself by surprise.  Laundry, grocery shopping, and meal planning have been incomplete to my wife’s alarm.  She’s used to me being the one who gets most of this done. Sorry honey!   My therapist says that this is normal and that things are going to get worse before they can get better.  I’m just afraid of what worse means.  I’ve also been way more emotional and triggered by things that I would normally just let roll off my back.

I’ve found myself unable to cry when I feel like I need to.  I don’t know if this is because of the anti depressants or because I’m somehow not in tune enough with myself to let the tears fall.  I’ve recently started getting sad books from the library because when I really get into a book I am able to let the tears flow. I was not sure if this was going to work because I had not tried it with this round of drugs, but last night it did still work. Is this self-care? I’m not sure.   I am able to identify more with a book than with my own life. I’m not quite sure what this says about me.

Sorry if this is TMI, but my entire blog is pretty much “too much information.” I was diagnosed with a urinary tract infection yesterday and boy has this been the biggest trigger so far.  It’s all I can do to stay awake and present with the pain from my lady parts. I’d love to just retreat by going to bed and pop a trazadone to fall asleep until the pain goes away.   I’m really glad my therapist and I did not do EMDR last night during our session because I don’t think I could have handled having flashbacks along with this intense pressure in my pelvic area. It was nice to be able to go home and be with Leah and lose myself in a book after therapy last night.  I think reading has always been a welcome escape for me even as a child. I remember loving how reading could take me away from the present moment and into the lives of other people.  I felt like I had a relationship with others through stepping into their lives.  I’m still learning which of my coping skills are “effective and kosher” and which are not.  I know that in a way reading lets me dissociate from the present, but it also serves as a great distraction.  It’s a lot better than drinking, self-harming, or eating.

More info about DBT http://behavioraltech.org/resources/whatisdbt.cfm

by krubesch

What Goes Up, Must Come Down

I don’t want to wait anymore I’m tired of looking for answers
Take me some place where there’s music and there’s laughter
I don’t know if I’m scared of dying but I’m scared of living too fast, too slow
Regret, remorse, hold on, oh no I’ve got to go
There’s no starting over, no new beginnings, time races on
And you’ve just gotta keep on keeping on
Gotta keep on going, looking straight out on the road
Can’t worry ’bout what’s behind you or what’s coming for you further up the road
I try not to hold on to what is gone, I try to do right what is wrong
I try to keep on keeping on
Yeah I just keep on keeping on

First Aid Kit – My Silver Lining Lyrics | MetroLyrics

 Klara Maria and Johanna Kasja Soederberg

I guess this was bound to happen.  From experience I should have known that when I start to feel good and happy I inevitably come back to reality because what goes up must come down.  I knew getting a new job was not going to fix me, however it made me feel great for a while and it helped fuel the illusion that my previous job was the source of all my problems.  In theory I know I can’t run away from myself, but making changes is about making your life better, right?  I’ve made my everyday circumstances infinitely better, but it looks like I am the common denominator.  It’s hard to tell if my recent withdrawal from friends and family is due to getting on Prozac and coming off of Zoloft or if the honeymoon is over and I have realized I still have my pain in the ass friend, Depression.  I wish mental health was easier to diagnose and separate factors that affect it so that I could know exactly how I need to fix myself.  Maybe it’s just winter. It’s been dreary and cold in Atlanta (minus a crazy week of sunshine and warmth) and I’ve found myself wanting to hibernate.

I keep myself crazy busy or I crash and relax. Relaxing works for about an hour and then I start to feel like a lazy slob and the inner critic starts to come out.  I can’t win. I know that keeping myself so busy is causing problems, but relaxing turns me into a zombie.  This is so fucked up.  Therapy has been hard, but I know it has to get harder because we are still just skating the surface.  I go from being so very hopeful to being hopeless in the period of 24 hours.  Sometimes I feel like no one gets me, but I’ve created that scenario because I don’t want anyone to get too close.  I feel like my emotions do a push and pull constantly and I wonder if that’s part of the reason why I am tired all of the time.  This need to over analyze everything is all-consuming and I want to know if I am tired because of The Elimination Diet, my medicine, introvert-ism, or the struggle of emotions and relationships.  It’s like I really need to know the cause of each issue or symptom so that I can understand why it’s a part of me. I know that everything intersects and what I want to know is an impossible feat.

I can tell that my diet is teetering on the line of doing something healthy for myself and disordered eating. I’ve had bouts of anorexia in high school and college and my all or nothing attitude is rearing its head in the food department again.  I told my therapist that this diet was not going to be too difficult because once I decide to do something, I do it.  It’s like I have just as much to prove to myself as everyone else.

 It’s funny because the people I feel like I have to prove myself to are either dead or not in my life anymore. I guess in a way the person I’m really trying to get approval from is myself. I’ve had a lot of dreams lately with my dad and my half-sister in them which is weird because they haven’t made appearances in my dreams in a really long time.  I’m not sure what this means. I guess maybe it’s my minds way of letting me know that I need to start dealing with these broken and unresolved relationships. I’ve pretty much been estranged from my sister for give or take 14 years.  It’s a complicated and painful relationship. One that I don’t think will ever change.  I just need to somehow let it go and move on.  I’m not sure why my father had five children when he couldn’t really be a father to any of us.  Since he was straight I guess he didn’t have to contemplate the pros and cons of bring a life into the world, much less five.  As lesbians who can’t just accidentally have children, we’ve very consciously had to think about if we can afford and emotionally support a child and if it’s the best decision for our family.

I told Leah last night that she was going to have to be patient with me. I can feel a storm brewing and I’ve seen the oh so familiar signs of depression sneaking up on me.  I know that when I neglect grooming such as clipping my nails, shaving, and jewelry and makeup I’m not feeling that great.  Don’t get me wrong, I shower every day, sometimes twice. We will all know I am in deep shit when I stop bathing!  I’ve also lost interest in reading, watching tv, and other activities that I enjoy.  I’m forcing myself to at least walk the dogs daily and play soccer once a week.  I’ve stopped trying to make plans with friends and just let Leah be in charge of our fun time.  Talking on the phone sounds like an impossible task at the moment. It just feels draining.

What I don’t know if this is just a temporary gloomy phase or if it’s going to be another 6-9 months of this.  That’s always the question on my mind when I start to feel sad. Whether it’s justified sadness or if I need to pull out all the stops to prevent myself from “going there.” I think that’s why I’ve avoided my feelings for so long, I am afraid they are going to be so big and all consuming.  Like they will swallow me whole and there will just be a shell of myself left.

by krubesch

Detachment

photo (6)

“If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
― Brené Brown

Many of you might think that the gender roles are easy to determine in my marriage, but just when you think you might have us figured out we swap places.  Leah does remove bugs from our house, but I mow the lawn.  We both cook- I cook a little bit more.  We both take pride in a clean house and in decorating.  I comfort Leah when she cries, which is often and I also mend our clothes with my minimal sewing knowledge. I fix the dishwasher and Leah plants our garden.  I show people I care by my actions and Leah uses her words. Leah is sensitive and I’m more shut off, which is why I thought “zoning out” and not really having a wide range of emotions made me a more dude like woman.   I thought that I just fit that male stereo type, but apparently it’s called dissociation.

“Dissociation is a phenomenon most people have the capacity to experience.  It is a coping mechanism used to manage stressors as minor as over-stimulation or as severe as sexual abuse.  As a way of coping, dissociation occurs when the brain compartmentalizes traumatic experiences to keep people from feeling too much pain, be it physical, emotional, or both.  When dissociation occurs, you experience a detachment from reality, like ‘spacing out.’  Part of you just isn’t ‘there in the moment.’” http://trauma.blog.yorku.ca/2013/04/the-fragmented-child-disorganized-attachment-and-dissociation/

I’ve been numbing my feelings and zoning out as long as I can remember.  It’s pretty crazy to me that I didn’t know that I dissociate until age 32.  I have counted ceiling tiles, organ pipes, stained glass windows and hats at church as long as I can remember.  Even on the rare occasion I am at church now, I find myself doing the same thing.  Leah will often ask me what I’m thinking and I honestly don’t have an answer for her on many occasions.  We will also have entire conversations that I don’t remember even though I’ve acted like I was listening and given answers where appropriate at the time.

My feelings happen in extremes. I know I’m mad when steam is about to come out my ears, I realize I’m stressed and overwhelmed once I feel tears threatening to fall down my face, and I know I’m depressed when I contemplate the pros and cons of ending my life.  I know I’m sad when I feel that hollow pain in my stomach and all I want to do is cry or sleep.

This is why I feel like I have become slightly narcissistic.  My blog is pretty much all about my thoughts and experiences due to the simple fact that I am experiencing and noticing parts of myself for the first time.  I’m slowly able to notice when my emotions are not overwhelming which is nice, but also uncomfortable.  By noticing a wider range of emotions I am able to feel content, happy, and relaxed.  Along with these feelings come boredom, indifference, and slight sadness. It’s the boredom and slight sadness that are the hardest for me to experience.  I know how to handle myself when I’m in the depths of despair.  I’m really good at that, but just sitting with a twinge of sadness is really hard.  I found myself getting mad at myself because I “shouldn’t” be sad at that particular moment.  I’ve found that “should” is a dangerous word.  “Should” has dictated my entire life and it’s really annoying how much I am catching myself using it.

I can’t help but to think about my childhood more as I am becoming aware of the ways I learned how to protect myself as a child.  On some level I think that I’ve always had an attraction towards women.  I’ve always looked up to role models in my life who were women.  I thought I wanted to be Gwen Stefani, but in reality I wanted to date her.  It would have been problematic for me to have figured I was gay at an earlier age, so I am thankful that I protected myself from that information. It’s amazing how the brain works.  How it knows when the rest of the body is able and ready to deal with memories and thoughts that it had hidden away.  My therapist told me early on that I still have these issues to work out because I was not ready until now.  These issues did not present themselves because my brain knew that I was not ready.  That’s intense.

I’m an analytical person so I tend to beat a dead horse into the ground.  I research things that are going on with me such as side effects to certain medications, information about any ailments, diagnoses,or issues that I’m having.  I guess that’s the way I process and start to understand things.  I’ve had to work very hard in school and developed a great if not excessive work ethic, so it’s foreign to me just to accept things as they are.  Part of me wants to determine the aspects of my personality that I have because I was abused and what is just me.  Unfortunately I don’t think I’ll be able to find the answer, but I need to learn to accept myself simply for who I am.

Feelings Image taken from pegitboard.com